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Support Care Cancer (2009) 17:15231530

DOI 10.1007/s00520-009-0621-7

ORIGINAL ARTICLE

An exploratory study on the Italian patients preferences


regarding how they would like to be told about their cancer
Emanuela Mauri & Elena Vegni & Edoardo Lozza &
Patricia A. Parker & Egidio A. Moja

Received: 15 September 2008 / Accepted: 17 March 2009 / Published online: 3 April 2009
# Springer-Verlag 2009

Abstract
Goal Major cross-cultural differences in truth-telling attitudes and practices have been demonstrated. Until recently,
in Italy the doctor could conceal both diagnosis and
prognosis to seriously ill patients out of beneficence. Signs
of change have been reported, but the extent and way
patients would be informed is still unknown. The aim of the
study was to assess Italian patients preferences regarding
how they would like to be told about their cancer and its
treatment. We examined the factor structure of the Measure
of Patients PreferencesItalian version (MPP-It) and
whether demographical and medical variables were associated with the dimensions of patients preferences.
Materials and methods Patients were invited to participate
during a visit to the oncology department of the Lecco
hospital (Italy) for chemotherapy or follow-up. An Italian
version of the MPP-It was administered. Data were
analyzed through a factor analysis.
Main results A total of 210 cancer patients agreed to
participate. Three main factors were identified: (1) InforE. Mauri (*) : E. Vegni : E. A. Moja
Department of Medical Psychology, School of Medicine,
University of Milan, San Paolo Hospital,
Via Di Rudin 8,
20142 Milan, Italy
e-mail: emanuela.mauri@unimi.it
E. Lozza
Department of Psychology, Catholic University of Milan,
Largo A. Gemelli 1,
20123 Milan, Italy
P. A. Parker
Department of Behavioral Science, The University of Texas M.D.
Anderson Cancer Center,
1515 Holcombe Blvd,
Houston, TX 77030, USA

mation (Talking About the Disease). Items in this factor


were concerned with the dialogue about the disease and
treatment options; (2) Support (The Emotional World of the
Patient). These items referred to the supportive and
relational aspects of the physicianpatient encounter; (3)
Care (The Ideal Doctor). These items related to the patients
desires about the doctors personal attributes.
Conclusions The first two factors, information and support,
were comparable to those of similar American and Asian
studies. The study suggests a cross-cultural uniformity among
cancer patients who appreciate the informative and clearness
of the communication aspects as being primarily important,
while also giving high points to relationship aspects. The third
factor appears unique to the Italian context.
Keywords Doctorpatient communication . Bad news .
Cancer . Patients preferences

Introduction
Delivering bad news and truth telling are complex and
frequently discussed topics in the international medical
literature. Questions regarding whether and how a patient
has to be informed [11, 16], the ethical implications of
telling the truth and giving bad news [19, 20] have been
discussed. Major cross-cultural differences in truth-telling
attitudes and practices have been demonstrated [21, 22],
and these disparities seem to be significant between western
and nonwestern countries [10, 13]. For example, in the
United States, physicians show greater interest in patient
autonomy [24], usually referred to as patient involvement in
medical decisions; the role of the physician seems to be that
of providing honest and complete information while the
patients and caregivers are elected decision makers [17]. In

1524

Italy, however, until recently, autonomy was synonymous


with isolation, and it was considered appropriate for the
physicians and the staff to conceal both the diagnosis and
prognosis of seriously ill patients to maintain their hope [2,
9, 22]. The practice of partial- or nondisclosureespecially
in the oncology wardis still common, and the general
level of patients awareness of diagnosis and prognosis is
still limited. Two examples from truth-telling studies in
Italy highlight this issue. Only 34% of Italian respondents
in a survey of different European Intensive Care Units
believed that full information should always be given to
patients. Moreover, a discrepancy between what physicians
state they believe and what they actually do in their own
practice is discussed in the paper [23]. In a second study,
the percentage of Italians dying of cancer who had received
information on diagnosis and prognosis had been estimated.
Results showed that only 37% had received information on
diagnosis and 13% on the poor prognosis [4]. Despite
persistent cultural resistance, the shift in truth telling
attitudes andto a lesser extentin truth telling practices
in Italy appears to reflect a genuine growing tendency
toward patients right acknowledgment [22]. Over the past
decade, informed consent policies and truth-telling attitudes
have suddenly evolved in Italy [5, 22]. The reasons for this
shift in attitude seem comparable to the ones in the U.S.
and Western countries, including diagnostic and therapeutic
advances in medicine (in particular in the field of
oncology), widely available clinical knowledge (via mass
media and internet research), and legal requirements for
privacy and informed consent [1].
In a context where truth-telling attitudes and practices
are slowly evolving, a very important issue to explore is
patients perceptions and preferences regarding the manner
in which physicians deliver bad newsespecially in the
oncology setting, since effective communication has been
closely related to better emotional adjustment and increased
patients compliance with doctor recommendations [6, 7].
Despite the growing interest in the patients perspective,
most of the suggestions about how to give unfavorable
news have been described from the physicians point of
view rather than on the basis of real patients preferences
and emotions. One study, conducted in the United States in
2001 by Parker et al. [15], assessed to what extent the
current guidelines regarding delivering bad news are
considered as important by cancer patients themselves. In
a sample of 351 cancer patients, the results showed that the
U.S. patients preferences fell into three main categories:
content (what and how much information is told), support
(emotional support during the interaction), and facilitation
(setting and context). Furthermore, patients in this study
identified the informative aspects and physician expertise as
the most important factors in the doctorpatient relationship. The study was replicated in different nonwestern

Support Care Cancer (2009) 17:15231530

contexts in order to explore differences and similarities


among countries. Both a Singapore [3] and a Japanese [8]
study were conducted using a similar questionnaire and
similar data collection methods, but with only partially
similar results. In the Singapore study, content and support
were found to be the only two important categories. In the
Japanese study, four factors were important, with support
identified as the most important dimension.
To our knowledge, no previous study has explored the
issue of Italian patients preferences about how they are
told about their cancer. Due to cross-cultural differences, it
is possible that the Italian patients may have unique issues
to be considered as important. The aim of the study was to
assess Italian patients preferences regarding the physicians way of delivering the news of their cancer
diagnosis. We examined the factor structure of the
MPP-It and whether demographic and medical variables
were associated with patients preferences.
To reach our primary goal, we used the Measure of
Patients Preferences (MPP) developed by Parker et al. for
their study [15] The MPP includes 46 items and was
generated by an extensive review of the literature on
breaking bad news including consensus guidelines. The
questionnaire was used to examine whether the current
recommendations in cancer communication are considered
important to cancer patients themselves.

Materials and methods


Patients
All the patients involved were treated at the A. Manzoni
Hospital, in Lecco, Italy, which has around 850 beds. The
study was approved by the hospitals ethical committee. To
be eligible to participate in the research, patients must have
been diagnosed with cancer and informed of their condition
at least 1 month earlier; diagnoses included new cancer,
recurrence, or disease progression. Other eligibility criteria
included: 18-years of age or older at diagnosis; no history
of psychiatric disorders noted in history taking for cancer
diagnosis; and a native Italian speaker.
Patients were either actively receiving chemotherapy or
they were visiting the clinic for follow-up monitoring. The
head nurse or the physician-on-call identified patients who
met the studys inclusion criteria. The patients were
approached before their visit or the chemotherapy in the
waiting room, informed about the study, and asked to
participate. Patients who agreed to participate were asked to
think back to the first time they were told about their cancer
while responding to the items in the questionnaire. At least
one of the researchers remained available to answer
questions while participants completed the questionnaire.

Support Care Cancer (2009) 17:15231530

Method
The Measure of Patients Preferences (MPP) questionnaire
was used. The questionnaire was developed by Parker et al.
[15] and was designed to assess patients preferences
regarding the manner in which physicians deliver news
about cancer. The MPP consisted of 46 items regarding the
main aspects of doctorpatient communication and was
generated by an extensive review of the literature and
interviews with physicians, researchers, and patients. The
questionnaire was translated for the present study by an
American native English speaker who has lived in Italy for
6 years, fluent in Italian, and with a clear understanding of
the Italian culture and language nuances. Next, the research
team reviewed the questionnaire to improve the language
and format. For practical reasons, the layout of the
questionnaire was modified in the way patients marked
their answers: the scores were presented for each item in a
pre-print form of a Likert scale from 1 point (not at all
important) to 5 points (absolutely important); patients had
to cross out the chosen number instead of writing it. Five
cancer patients were asked to complete the questionnaire to
confirm its clarity and comprehensibility. No modifications
were introduced at this stage, and the questionnairethe
Italian Measure of Patients Preferences, MPP-Itwas
considered ready for use. Clinical and demographic data
were collected in a separate sheet in order to maintain
anonymity.
Statistical analysis
Descriptive analysis was used to examine the clinical and
demographic data collected.
The 46 items were entered into a factor analysis
(extraction method: principal components analysis; rotation: varimax). Factor analysis was used to group the items
according to the different aspects of patients preferences.
Items with factor loadings of 0.50 or more were considered
reliable and retained.
The means and SDs of the factors were also organized in
descending order. A regression analysis was used to
examine the relationship (p<0.05) between the medical
and demographic characteristics and the MPP-It factors
previously identified.

Results
Patients and disease characteristics
Two hundred twenty patients were invited to participate in
the study. Ten patients declined to participate (for ethical
reasons no further details were asked of declining patients);

1525

thus, the final sample included 210 patients, resulting in an


overall consent rate of 95.5%. Fifty-seven patients were
men (27.1%) and 153 were women (72.9%). The mean age
was 59 years (range, 2894 years). Ninety-two patients
(43.8%) completed the questionnaire during their chemotherapy and 118 (56.2%) while waiting for their follow-up
visit. The majority of patients had less than a college degree
(63.5%). As far as their profession is concerned, most were
retired (40.5%) or housewives (22.4%). The majority were
married or with a domestic partner (67.6%) and lived in
Lecco or nearby (85.5%). The mean time since patients
received their first diagnosis was 39 months (range, 1
172). Breast (46.7%) and digestive (23.3%) cancer were
the most represented. Forty-nine and one-half percent of
patients were free of disease when they completed the
questionnaire.
The sociodemographic and medical characteristics of the
sample are shown in Table 1.
Factor analysis
We identified three main factors on the basis of a Scree
plot. Together the three factors accounted for 44.31% of the
total variance. This total variance represents the proportion
of variance across all the items accounted for by the three
factors.
The three factors with their loaded items are shown in
Table 2.
Factor 1Information (Talking About the Disease).
Fourteen items were loaded on this factor, accounting for
30.94% of the total variance. Items in this factor were
concerned with the dialogue about the disease and
treatment options (e.g., My doctor telling me the best
treatment option and Being given information about new
experimental therapies) and with the patients opportunity
to participate in the visit (e.g., Being given enough time to
ask all of my questions and Having my doctor ask me
how much I want to know about my cancer).
Factor 2Support (The Emotional World of the Patient).
Ten items werer loaded on this dimension and accounted
for 7.68% of the total variance. These items referred to the
supportive and relational aspects of the physicianpatient
encounter (e.g., Comforting me if I become emotional
and Telling me its okay if I become upset). Also
included were elements related to the physicians role as a
consultant about changes in the patients home and social
lives (e.g., Having the doctor tell me about resources in the
community and My doctor helping me to figure out how
to tell my family and friends about the cancer).
Factor 3Care (The Ideal Doctor). Ten items loaded on
this factor, accounting for 5.69% of the total variance These
items related to the patients desires and expectations about
their doctors visits and the doctors personal attributes (e.g.,

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Support Care Cancer (2009) 17:15231530

Table 1 Socio-demographic and medical characteristics of patients


(N=210)
Characteristics
Gender
Male
Female
Age
Level of education
No education
Primary school
High school
Some college
College degree
Graduate degree
Data missing
Marital status

Number of patients (%)

Care one). Furthermore, as in Parker et al. [15], the


correlation among the three subscales were significant but
of low magnitude (Pearsons r<.35).
Ratings of patients preferences in receiving bad news

57 (27.1%)
153 (72.9%)
59 years (range, 2894)
1 (0.5%)
60 (28.6%)
50 (23.8%)
22 (10.5%)
58 (27.6%)
11 (5.2%)
8 (3.8%)

Married/domestic partner
Single
Widowed
Separated/divorced
Data missing
Types of cancer
Breast
Digestive
Leukemia
Lung
Urologic
Skin
Other
Data missing
Cancer status
Remission
Primary disease
Metastasis

143 (68.1%)
24 (11.4%)
29 (13.8%)
8 (3.8%)
6 (2.9%)

Recurrence
Data missing
Treatment
Chemotherapy (all kinds)
No treatment at present
Data missing

12 (5.7%)
7 (3.3%)

98
49
23
15
9
5
9
2

(46.7%)
(23.3%)
(11.0%)
(7.1%)
(4.3%)
(2.4%)
(4.3%)
(1.0%)

104 (49.5%)
72 (34.3%)
15 (7.1%)

116 (55.2%)
92 (43.8%)
2 (1.0%)

Of the 46 questionnaire items, we identified those that the


participants rated the highest and lowest. The mean ratings
and standard deviations are listed in descending order in
Table 3.
The majority of items that received the highest ratings
referred to the informative nature of the doctor regarding
the biological aspects of the disease when delivering bad
news. Delivering the diagnosis in person was rated by
patients as the most important item (mean rate 4.65, SD
0.60) when receiving a cancer diagnosis. Physical contact
between the physician and the patient during the visit was
the lowest marked item (mean rate 2.36, SD 1.55).
Relationship between patients preferences and demographic
and medical data
Multiple regression analysis was used to examine the
associations between the three identified factors of the
MPP-It and the demographic and medical characteristics of
the patient sample. Sociodemographic (gender, age, education, marital status) and medical (cancer recurrence, stage
of disease) data were converted into dummy variables.
Cancer status was divided into primary disease (with or
without metastasis) and remission; treatment status was
distinguished as chemotherapy vs follow-up; the level of
education ranking was categorized into college or no
college degree. Marital status was categorized as unmarried
or married.
No significant associations between the demographic
and medical characteristics and the information and care
factors were identified. On the contrary, the support
subscale was significantly related to the level of education
(stand. beta=2.9, p<0.05). Patients without a college
degree rated the support subscale as more important than
those with university education (t test=3,62, p<0.001).

Discussion
The doctor telling me how I can get in touch with him/
her, Making me feel comfortable enough to ask any
question on my mind, and My doctor telling me that he/
she will do everything he/she can to cure my cancer).
As for the psychometric properties of the three factors,
internal consistency was assessed by calculating Cronbachs alpha for each of the three subscales of the MPP-It.
These subscales have good internal reliability (0.93 for the
Information subscale, 0.89 for the Support one, 0.88 for the

Truth telling is an important issue in the international


medical literature on the doctorpatient relationship in
particular when a poor diagnosis had to be told. Differences
in the process of delivering news arise from the delicate
balance between autonomy and beneficence in medicine,
under the influence of cultural variables. Cultural differences between western and nonwestern countries seem to
be still present in this field, although signs of change are

Support Care Cancer (2009) 17:15231530

1527

Table 2 Factor analysis of the measure of patients preferences (Extraction method: Principal Component Analysis. Rotation Method: Varimax
with Kaiser Normalization)
Component and factor loadings
Factors [e.v. = explained variance] and items
Information (talking about the disease) [e.v.: 30.94%]
Being given detailed information about the results of medical tests
My doctor describing all of my treatment options in detail
Having my doctor ask me how much I want to know about my cancer
My doctor telling me the best treatment option
My doctor telling me the prognosis
Being given information about new experimental therapies
Having my doctor ask me how much I want to know about treatment
My doctor letting me know all of the different treatment options
My doctor telling me how my cancer may affect my daily functioning
Having the doctor be honest about the severity of my condition
My doctor giving me a lot of information about my cancer
Being given enough time to ask all of my questions
Having my doctor take the time to answer all of my questions completely
My doctor telling me about support services that are available to me
Support (The emotional world of the patient) [e.v.: 7.68%]
Comforting me if I become emotional
Encouraging me to talk about my feelings about the news
Telling me its okay if I become upset
Doing things to show his/her concern for me
Making me feel okay to show my emotional reactions to the news
Having the doctor inform my family members about my prognosis
Having the doctor inform my family members about my diagnosis
My doctor helping me to figure out how to tell my family and friends
Having another health care provider to offer support and information
Having the doctor tell me about resources in the community
Care (The ideal doctor) [e.v.: 5.69%]
My doctor giving the information in clear, simple language
The doctor setting aside enough time so he/she is not interrupted
Having my doctor give me his/her full attention
Feeling confident about my doctors technical competence and skill
Having my doctor give me his/her full attention
Being told in person rather than over the phone
My doctor being up-to-date on research on my type of cancer
The doctor telling me how I can get in touch with him/her
Making me feel comfortable enough to ask any question on my mind
My doctor telling me that he/she will do everything he/she can

present in those countries with a well-known attitude of


nondisclosure, such as Italy. In a changing Italian medical
context, the question that the study aimed to answer was
whether the current recommendations in the cancer literature and the patient-centered style are considered as
important by cancer patients themselves.
Factor analysis indicated that the patients preferences
can be grouped into three factors: information, support, and

II

III

0.740
0.737
0.713
0.701
0.690
0.680
0.636
0.635
0.625

0.146
0.166
0.173
0.006
0.141
0.095
0.059
0.216
0.265

0.209
0.095
0.178
0.182
0.155
0.098
0.152
0.139
0.113

0.591
0.587
0.564
0.536
0.518

0.076
0.161
.29
0.261
0.412

0.247
0.103
0.353
0.330
0.264

0.079
0.185
0.005
0.100
0.120
0.177
0.195
0.162
0.178
0.385

0.746
0.724
0.719
0.662
0.656
0.628
0.626
0.618
0.569
0.504

0.188
0.139
0.300
0.030
0.306
0.068
0.087
0.018
0.059
0.196

0.290

0.010

0.661

0.121
0.222
0.211
0.139
0.170
0.404
0.355
0.244
0.210

0.029
0.380
0.104
0.268
0.111
0.087
0.370
0.428
0.441

0.645
0.627
0.622
0.603
0.580
0.555
0.541
0.513
0.512

care. The first two factors seem to indicate that the patients
look for an open dialogue regarding the medical and
therapeutic characteristics of the disease and for an
encounter in which shared decision-making is valued. It is
interesting to note that these two factors seem to be crosscultural, being present in the American study [15] but also
in similar Singapore [3] and Japanese [8] replications. In
these countries, as well as ours, the content and process of

1528

Support Care Cancer (2009) 17:15231530

Table 3 Items rated ad more


and less important by patients
The ten items rated as more important
1. Being told in person rather than over the phone
2. My doctor giving the information in clear, simple language
3. Waiting until all test results are in and he/she is certain before telling me
4. My doctor being up-to-date on research on my type of cancer
5. My doctor telling me the best treatment option
6. Feeling confident about my doctors technical competence and skill
7. Being given detailed information about the results of medical tests
8. My doctor describing all of my treatment options in detail
9. Being told as soon as possible
10. Having my doctor take the time to answer all of my questions completely
The 10 items rated as less important
37. Being told by a doctor who knows me well
38. Having my doctor inform my family members about my prognosis
39. The doctor giving me a written summary of the information to take home
40.
41.
42.
43.
44.
45.
46.

Comforting me if I become emotional


Having the doctor inform my family members about my diagnosis
My doctor helps me to figure out how to tell my family and friends
My doctor warning me that he has unfavourable news to tell me
Having another health care provider present
Doing things to show his/her concern for me
The doctor holding my hand or touching my arm while telling me

information giving are crucial components of the disclosing


of the diagnosis, alongside with the necessity of having
support. The factor care seems to be an Italian peculiar
one. The study from Singapore identified only two
previously mentioned factors, while the Japanese study
presented two different factors for the providing of
information (named method of disclosure of the bad
news and provision of additional information). The
American patients identified a third factor, named facilitation, concerning setting and context variable. The
Japanese study presented a forth factor, named setting:
in both studies these factors may be described, as the
elements of the physical or social environment of the
consultation. The Italian patients seem to introduce a
different factor, that of the emotional setting due to the
mental status of the interactional subject (i.e., the physician)
involved in the communication process. This difference
may be interpreted as a cultural distance from the American
population, which shift from a paternalistic view to a more
informative and open truth-telling attitude that happened
between the 1960 s and the late 1970 s [14, 18], while for
our country, it is a still ongoing process [22]. The crucial
importance of the doctor as a person who cares and is
personally involved with the patient may lookout a still
asymmetric relation between the doctor and the patient, a
relation in which the doctor is up. It is interesting to note
that, while the Italian and the Japanese medical cultures

Mean

SD

4.65
4.58
4.57
4.57
4.55
4.55
4.47
4.47
4.46
4.43

0.60
0.86
1.01
0.75
0.94
0.86
1.05
1.05
0.96
0.81

3.49
3.45
3.35

1.34
1.64
1.48

3.34
3.30
3.10
3.08
2.81
2.79
2.36

1.40
1.40
1.42
1.70
1.39
1.85
1.55

have been described as similar in terms of the strong


western influence resulting in a shift from the traditional
doctorpatient relationship to a less protective role of the
physician [10, 22], this do not seem to be the case in our
study.
As far as the most and least important items are
concerned, a comparison between the ten highest and the
lowest rated items in the American and Italian studies
showed that five out of the ten most important items are the
same in the two countries. The same could be observed for
the study conducted in Singapore. Interestingly, the two
highest-rated items present only in the Italian sample
(Waiting until all test results are in and he/she is certain
before telling me and Being told as soon as possible)
regard the when the news should be told, and seem to be
contradictory. At the same time, among the lowest rated
items, two out of ten are present only in our study (The
doctor giving me a written summary of the information to
take home, Doing things to show his/her concern for
me.), and they seem very different ways for favoring
patients participation.

Conclusion
Although there is increasing interest in the international
literature on the topics of bad news communication and

Support Care Cancer (2009) 17:15231530

truth telling, relatively little empirical work has focused on


the patients preferences about the existing guidelines. The
aim of our study was to explore the Italian patients way of
thinking about the current reccomendations about how bad
news should be delivered.
Overall, the data seem to reflect some ambiguity
among Italian patients, who mostly want to be informed
about the diagnosis but are confused about this opportunity: the right to be informed in a timely manner in
order to participate in their care is both desired and
avoided; a participatory model of relationship that is less
asymmetric is not considered as important. These data
are consistent with the professional perspective regarding
truth telling. The absence of extensive research in this
field in Italy could reflectas Surbone et al. pointed out
[22]a persistent benevolent paternalism leading to lack
of interest in this type of research. A recent study by our
group aimed at identifying cross-cultural implicit definitions of the concept of patient-centeredness in an
American and an Italian group of health care professionals further provided evidence that, despite claims,
professionals attitudes regarding truth telling and the
patients involvement is slowly moving [12]. Results of
this study demonstrated that the respect for the patients
autonomy was a core aspect of patient-centered care only
by the American group. The Italian group showed a
more implicitly paternalistic approach. The findings of
the present study seem to confirm this caution in the
practice of telling the truth also from the patients point
of view.
Although our work presents some interesting information about Italian cancer patients preferences, we
recognize its limitations. First of all, the sample of the
study is relatively small and nonrepresentative. Despite
the high rate of patients acceptance in participating in
the study, the recruitment was from one hospital in
Lecco, and over 85% of the patients included in the
study reside in Lecco or the surrounding area in Northern
Italy. The largely nonsignificant results of the regression
analyses may be also due to the small sample size and
insufficient power to detect associations. Lastly, in our
study, we used the same method for collecting data as in
the American study which was developed for a different
country and culture. This choice allowed us to make a
direct cross-cultural comparison. But it is possible that a
preliminaryqualitativein depth analysis of cancer
patients preferences would have generated different
items not even imaginable at this point. Further research
could better explore the issue of which are the Italian
patients preferences about the manner in which physicians deliver news about cancer diagnosis by directly
asking patients opinion and point of view in an in-depth
interview and with a qualitative research method.

1529
Acknowledgments We thank the medical and nursing staff of the
Department of Oncology of the Hospital in Lecco, Italy, and in
particular the head physician, Dr. G. Ucci. We thank Drs. Francesca
Pistarini and Alessandro Gabetta for their input and hard work on this
project. We thank Dr. Cristina Nova for her participation on the
research. We also thank scientific editors Kathryn Carnes and Sue
Moreau from The Office of Scientific Publications at The University
of Texas M. D. Anderson Cancer Center for their help with this
manuscript.

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